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Tuesday, March 22, 2011

Book Review: The Immortal Life of Henrietta Lacks by Rebecca Skloot

Synopsis:

Longtime Discover fans may recall the name Floyd Skloot from years past. Floyd, an acclaimed poet and memoirist, was a finalist for the Discover Award in 2003. Well the apple doesn t fall far from the tree. His daughter's debut, an intriguing book about the harvesting of DNA from an unsuspecting woman, is a marvel.

Rebecca Skloot first learned about HeLa cells more than a decade ago, while enrolled at community college. Named after Henrietta Lacks, a poor African-American woman born in 1920, the famed cells were taken from a tumor removed during Lacks s treatment for cervical cancer. While she died from the disease, her cancer cells proved uncommonly hearty, reproducing at an unheard-of rate, and years later, billions of these cells are used in laboratories around the world.

The Immortal Life of Henrietta Lacks is a story about science and so much more. Lacks died unaware that doctors would be using her cells to further advances in the scientific community and cashing in on such developments and never received a dime. In search of justice, Skloot seeks out Lacks s descendants to learn if they re aware of the famed cells and to see if they ve derived any benefit from the important contribution to science their relative made. A fascinating discussion of the enduring legal and ethical questions that human-tissue research raises, Skloot's debut is a gem. (Image and synopsis from goodreads.com)

My Review:

This is one of the most important books I have ever read. I originally listened to this book on an audiotape, borrowed from the library, on a long drive. My drive flew by, hours became seconds, and I was home before I knew it because this book was so fascinating. (I then had to buy it and read it again, but I do also recommend the audio version because it was very, very well done and I loved hearing the dialect of the Lacks family- it made listening to it, and subsequently reading it, more personal.)

The Immortal Life of Henrietta Lacks is part biography of a family and part science and ethics. A young black woman died in the 1950s from invasive cervical cancer, she left behind 5 young children, a husband, and a tissue sample that revolutionized science.

When Henrietta was diagnosed with cervical cancer, her doctor took a sample of the cancerous tumor and sent it to researcher to see if he could culture a cell line from the sample. Henrietta's cancer cells grew like wildfire- they multiplied continuously, lived easily in the right culture medium, and contaminated other cell lines because they could even survive floating through the air on dust particles!

Scientists had been unable to culture human cells beyond a generation or two of the original cells, but now they had the HeLa cell line, named after Henrietta Lacks. Now, scientists could use her human cells to discover the polio vaccination, cancer treatments, find the effects of nuclear bombs, and send them into space. Businesses sprang up that cultured and grew her cells commercially to sell to individual research labs so that researchers didn't need to waste time growing their own stock. Henrietta's cells saved many lives through the vaccinations and treatments it helped researchers to discover.

YET, Henrietta's family lived in povery and were extremely uneducated. It was years, decades even, before her family even learned that Henrietta's cells were alive. Because most of the family had only 4 to 8 years of school, they didn't know enough basic biology to even know what cells were or how they could still be alive. Visions of evil experimenters hurting their wife, mother, or sister tormented many family members. Even when they learned about the HeLa cells, no one took the time to explain what that meant.

Through their fears, they were preyed upon by a con-artist and used by researchers to take samples of their blood. Eventually, Rebecca Skloot, a young and white science journalist began asking questions and found the Lacks family. She had to work to gain their trust, but she eventually did and went on to discover their family history, including details about one Lacks sibling who died in a mental institution as a young girl.

Rebecca researched both the family and the scientific and ethical questions surround HeLa. Businesses made a lot of money off of growing and selling HeLa cells, as well as using it to make important advances, yet the Lacks family couldn't afford health insurance or education. The central question to this book is... who owns the cells? What right did Henrietta, and by extension, her family have in the use of the cells? Should they have received any financial compensation?

The Immortal Life of Henrietta Lacks reminds me where science has come from and why regulations are there. As an undergraduate in neuroscience, I researched in a lab using human post-mortem tissue. This tissue was obtained only through consent of the person before they died or from the immediate family after their death. The tissue is also handled so that no personal information, such as names, is ever linked with the tissue. The tissue bank and use of the tissue is also regulated through two review boards, one from the university and another through NIH. This was not the case in the 1950s, or even through the 1980s. Doctors didn't necessarily need consent for obtaining tissue and they weren't obligated to separate personal information from the tissue.

I think this is an important book for any researcher because it serves as a reminder that science affects the general population even when they may not be aware of it. It also reminds scientists to consider ethical dilemnas before proceeding in their work or press releases.

The Immortal Life of Henrietta Lacks also portrays a family struggling with the death of their mother and their inadequacy to understand what she meant to science- leading to anger and frustration and paranoia. This is an amazing and personal look into the Lacks family that any reader can appreciate and sympathize with in their own way.